This survey aims to collect information about experience of seizures in people living with TSC or caring for someone with TSC.
This information is being collected by Tuberous Sclerosis Australia (TSA) to assist in the preparation of a submission to the July meeting of the Pharmaceutical Benefits Advisory Committee (PBAC). At the July meeting, the PBAC will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC and experiencing seizures that do not respond well to available treatments. If the medicine is approved for listing it will be funded by the Australian government as a part of the PBS.
The survey is open to people over the age of 18 years, and is anonymous and voluntary.
To answer the survey, select the option/s that apply to you or the person you care for with TSC. We welcome your additional comments as these are very useful in preparing our submission.